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6.6.14

The world is not a wish granting factory...

So today was Papworth Clinic day and I can honestly say I've had better clinics. They are starting to really worry that my transplant may never happen. We had a discussion and my doctor mentioned just doing double lung transplant again because it is just taking too long to find a match for heart and double lung. The problem is we initially ruled it out because of how damaged my heart is and when we were talking about it today my doctor said if we were to go down that route it would all come down to how I recovered initially after the transplant but he's not even sure the surgeons would even do it in the first place because it would be far to risky.

So today I was given the option of staying the course and having faith that I will eventually get my call for heart and lungs or choose to do a extremely risky operation which has an extremely slim chance of working. I chose the former. I know my situation is extremely precarious at the moment, I know I'm running out of time and everyone is really starting to worry but I refuse to take a chance on something that I know in my heart won't work, even if I did pull through with just double lungs I would still have a damaged heart and I would still end up living a life limited because of that heart and it would likely damage the new lungs anyway. People might think I'm being foolish but that is one risk to many for me and it would be idiotic of me to say yes to something like that because everyone is starting to get scared that it's not going to happen. I can't do something that I don't believe will work and the doctors thinking there's only a slim chance of it working as well.

It really annoys me though I shouldn't be having to make these kinds of decisions. But like the title says "The world is not a wish granting Factory". I've had a few miracles in my time maybe that's all I get. Not everyone gets their wish and if life has taught me anything good things don't happen to good people, in fact a lot of good things happen to bad, horrible, mean people and I shouldn't expect anything else.

I'm wishing with all my heart and soul for life to grant you that one wish, Stacie. Don't give up hope, i know words means little and i won't ever understand (coz i am not in your situation) but i do hope that you know that there are people who cares (even though we're practically strangers and most probably would never meet in real life) and keeping you in their prayers!

Oh Stacie. Reading this blog post is stirring up so much emotions within me. It's truly unfair that good people like you are made to suffer from such a disease. I really hope that life is also kind enough to grant you another wish. I'll certain keep you in my thoughts and prayers. Praying for you to get that much awaited call. Keep smiling, beautiful. :) #positivethinking

Yes that's what they would like to do anon. But the problem is it would be more likely that just lungs would become available and we're not sure that I would pull through on just lungs so I'm just staying on the list for heart and lungs at the moment xoxo

I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.

This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.